Lupus – the great imitator
After years of complaining about chest pains and swollen joints, Dorothy Johnson, had given up on any hope of relief.
She had been to so many doctors who were unable to tell her what the crushing pain was in her chest and why, at times, it was difficult to comb her hair, simply because her fingers couldn’t grasp the handle securely.
“I was having some chest pains for a long time. I went to the doctor and he told me to do a x-ray. The results came back and he said that I had an irregular heartbeat and there was fluid on the lungs. But I wasn’t pleased with that result, so I went to another doctor…” she told All Woman.
Later Johnson had a breakthrough when her daughter, who lives in the United States, telephoned to tell her that she had Lupus. Immediately, she realised that maybe her symptoms were signs of the debilitating disease.
“This time I went to the family physician in the country and I told him that my daughter had called me from the States saying that she had lupus and it is a family thing (heredity),” she said.
It didn’t take Johnson long to begin tracing her family’s genetic makeup. She said the hurt that she had felt piqued her interest and so she was determined to find out why this had happened to her.
First, she started with her grandmother by asking questions. Then, she specifically checked for the auto-immune disease.
Her worst fear was confirmed. She had Lupus.
This story, however, is not uncommon in Jamaica. According to health officials and some members of the Lupus Foundation of Jamaica, (LFJ) this is a typical track record of the illness. They say it needs to be specifically tested for through a blood test.
“You have some women with lupus where it just tek off de whole a dem hair and you have others that when you look at dem skin you would scorn dem,” Johnson said incredulously.
“I have a cousin with the skin rashes and most times she has to wear long sleeve clothes because it’s pure black-black spots you see on her. She has to be admitted sometimes on the skin ward at the University Hospital…(she pauses)
“For me, my rashes came out like ptomaine poisoning and will last for a day or two then disappears.”
In Jamaica, Systemic Lupus Erythematosus (SLE), a chronic inflammatory disease, attacks 1 in 250 women. But during the past three decades, SLE has emerged worldwide as a major rheumatic disease with a marked predominance in black females, especially in their childbearing years.
It is incurable and often mimics other illness — which is why it is known as the great imitator. It causes the body’s immune system to become hyperactive, turn against itself and destroy healthy tissue. It is reported to appear as an immuno-regularatory disturbance brought about by the interplay of genetic, hormonal and environmental factors.
“Lupus interferes with the functions of the organs,” stated Dr. Karel De Ceulaer, professor of rheumatology and president of the Lupus Foundation of Jamaica (LFJ).
“It occurs in 1 in every 250 women, which is the figure that that is comparable to sickle cell disease and other diseases. Lupus is a disease of women more than men; there are ten women for one man,” Dr. Ceulaer told All Woman.
He said: “It is a disease of young women. Young women between 18 and 35 years can get lupus although it can exist at anytime, depending on the antibody that is produced. The main symptoms are joint pain and skin rashes.”
Other symptoms include unexplained fever, extreme fatigue, kidney problems, and sensitivity to the sun, anaemia, swelling in the legs and around the eyes.
The LFJ has been trying to raise awareness about the disease and is observing October as Lupus Awareness month.
This week (October 20 — 24) will be recognized as Lupus Awareness week and will feature a symposium put on by the Foundation.
Recently the Foundation held a discussion on early menopause at the Girl Guides Association’s headquarters in Kingston. A small contingent of Lupus sufferers gathered for the Foundation’s third quarterly meeting to talk about the issue.
Early menopause is sometimes brought on by the medication prescribed for the disease.
Menopause occurs at an average age of 51 and results in no periods, infertility and lack of estrogens. It is called premature ovarian failure and all of these symptoms can occur by age forty.
“The symptoms of early menopause are irregular periods, hot flashes, night sweats, mood changes, painful intercourse and the reduced ability to conceive,” said Dr. Michael Boyne, guest speaker and a lecturer in endocrinology at the University of the West Indies.
He informed the over 20 persons, mostly women, that premature ovarian failure usually results from surgery, pituitary gland diseases, autoimmune disorders like thyroid, adrenal, type 1 diabetes and lupus as well as radiation chemotherapy for tumours, rare genetic syndromes, viral infections and idiopathic.
“While normal menopause is irreversible, premature ovarian failure has an intermittent function of 50% and patients may still ovulate and can still get pregnant,” he advised.
